Don’t Let Your Diagnosis Take Away Your Ability to Live NOW
A while ago I was feeling tired and found myself debating whether I wanted to put out the energy to get together with some friends. Going out and lugging my oxygen around is a lot of effort, and it wears me out. It hit me that this was the best I was going to feel, and I didn’t want to miss out on the experiences I could enjoy now.
I wanted
to remind us that despite the hardships of our diagnosis, we still have NOW to live our lives.
Last year I gave a workshop about having compassion for yourself during tough times. I shared about my health struggles these last 3 ½ years – first being diagnosed with breast cancer and then pulmonary fibrosis. As I was talking I spontaneously blurted out, “Don’t let what has happened, is happening, or your fear of what will happen, take away your NOW.”
I still have NOW, no matter what the future holds, and so do you!
As I write this blog, I am in southern California for my father-in-law’s memorial service. It is hard for me to travel, but I didn’t want to miss honoring him and also getting together with our extended family. I am cherishing each moment and interaction because I have NOW and want to make the most of it.
Don’t let your diagnosis take away your NOW or who you are. You are still you, I am still me – even with my new limitations, oxygen use and tiredness.
I like to think about myself and my life this way…
- Despite my limitations, there is still so much I can do.
- My lungs are disabled, but I’m not.
- I have NOW to live the life I have, and want to make each moment as meaningful as possible.
- As difficult as it is to have a terminal illness, there is an unexpected blessing in choosing wisely how to spend my time and energy.
- I have pulmonary fibrosis, but that is not my identity. I am Kim, loved by God, who holds me firmly in His hand. I am still me. I have to work with and around pulmonary fibrosis, but that is not my identity. I’m still me – and I still have NOW.
As a marriage and family therapist of 30 years I’ve noticed that those who ascribe their identity to what has happened to them rarely work through hardships and find peace. They stay stuck, and sink deeper into what has happened to them, losing their NOW and their future.
I’m in a continual process of grieving and adjusting to my new normal because of pulmonary fibrosis. I try to stay balanced as I embrace and grieve my reality, while enjoying all I have NOW.
I encourage you to join me in taking care of ourselves, being compassionate with ourselves and grabbing hold to the life we have to live NOW.
Comments, please! — I’d love to hear how you embrace the life you have to live NOW. Please share on social media and with anyone you feel could benefit.
Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News, or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.
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Comments
Mary Ann
Hi Kim,
I have been searching for information on Pulmonary Fibrosis and came across your blog.
My husband was recently diagnosed and was told in the hospital that he had about 4 years to live.
We have been trying to deal with the whole situation and I feel torn to pieces. I want him to live and we have an appointment to see his doctor and see if they can put him on a trial medication. I'm not ready for him to give up. Any advice?
Kim Fredrickson
Hi Mary Ann, thanks so much for your comment. First, I'm so sorry to hear of your husband's diagnosis and how your lives have been turned upside down. It is a shock, unbelievable and devastating. I was a mess emotionally for at least 6 months, and still go and down regularly. My encouragement to you both is to get as much support from others as possible, and seek your doctor's advice and ask him/her for everything possible they can offer your husband (trial, pulmonary rehab, possible support groups in your area). Allow yourself to grieve as it comes. I have a lot of blog posts http://pulmonaryfibrosisnews.com/category/just-breathe-compassionate-help-for-the-pf-journey/ including a couple on grief that might help. My faith is a huge help to me, as well. I'm sending prayers and hugs your way, Kim
Eric Strayer
I fully agree with the notion of living in the "now". It is suppose to be how we live all the time. That is, if we actually want to be wholly ourselves. My favorite Alan Watts says, among many other things:
"If my happiness at this moment consists largely in reviewing happy memories and expectations, I am but dimly aware of this present... If, then, my awareness of the past and future makes me less aware of the present, I must begin to wonder whether I am actually living in the real world.
~Alan Watts, "The Wisdom of Insecurity" 1951)
In my life, at present, I am accompanied by Idiopathic Pulmonary Fibrosis. From posts I have seen on this site, it appears I am not alone. But I knew that already, didn't I?
I have been ruminating upon my condition since late October 2016, when a lung biopsy determined that it was certain it was idiopathic fibrosis. The recovery from the biopsy surgery was pretty long and really awful. I know what a lot of folks are going through, but am curious about what lies ahead, in spite of my blather about living in the now. I pretty much do so, but being cursed with the human ability of remembering the past and anticipating the future the best I can do is accept what is down the road. I also appreciate your statement about ascribing one's personalty based upon their past. Pretty tough though.
So, as i said, I would like some sort of correspondence. My blog (journal) kind of spells out where my head is these days. Thanks. es
Kim Fredrickson
Hi Eric...thanks so much for responding to my blog post. I'm so sorry you are dealing with IPF and all that goes with it. Thanks so much for sharing that wonderful quote from Alan Watts, very inspiring. You are not alone in struggling to find a balance between living in the present and all it has to offer, with the reality of our disease and what lies ahead. My thoughts and prayers are with you. We're in this together :)
Lia
My mother is in her final stages of PF .. It is a very difficult disease to see your loved one gasping for air . She was diagnosed in Oct 2016 and will be on hospice soon. She is 76 and on 12-15 liters of oxygen . She just became too tired to walk and now to talk . I have been giving her daily bed baths with washing her hair with a no rinse shampoo . She is still home and we plan to keep her there as soon long as we can .. The final stages are horrible to watch and I can't imagine being her and struggling as much as she is .... Prayers to everyone with this disease and any debilitating disease !!! Enjoy as many days as you can!!! God Bless !!!!
Cathy Winters
My husband is in severe stage of IPF. He just started taking Pirfenidone (87cents to manf/$10,000 per month), but we got a grant.
Any comments??
Kim Fredrickson
Dear Cathy,
Thanks for sharing. I hope that medication helps slow down the progression of PF. So glad you got a grant!
DJ HIXSON
Kim I am reading your book and was wondering about your comment of refusing O2 like an 85 yr old but agreeded on a portable O2. You stated you use 10 liters to exercise I can only find portable units that give 6 liters no higher. Where do you get one that delivers 10 liters? And I understood the medication was not advised in severe cases. I am newly diagnoised and cannot afford the medication because I am on Medicare and the co pay is $1000 a month
Kim Fredrickson
Hi DJ,
Great question. You are right there are no portables oxygen concentrators that go up to 10 lpm. I use liquid oxygen (which can be difficult to get, depending on where you live). They have portable containers, called strollers that go up to 15 lpm. If you use gas cylinders you can ask your doctor to order a "regulator" that goes up to 15 lpm. I haven't had experience taking the medication myself. I have heard other patients get a discount directly from the Drug provider. Here is a link to Esbreit https://www.genentech-access.com/patient/brands/esbriet.html and also Ofev https://www.ofev.com/prescription-savings This is a place to start! Hope it helps.
DJ HIXSON
Also there is no support groups where I live, lucky to have a pulmonary dr